Stepping naked in front of the whole world

The "long awaited article" about the effects of social online networks for people with M.E. is finished. I actually ended up with two versions.

One that chronicles, in some detail, the experiences of the 15 participants to the survey:

“Stepping naked in front of the whole world…”

This is the way a young woman living with the condition M.E. (in some countries referred to as Chronic Fatigue Syndrome, CFS), described her first encounter with the social networking site Facebook.

Bedridden and housebound for the past twelve years, 32-year-old Kirsten rarely sees people other than her immediate family. Making contact with people through Facebook felt “scary” she said. Now this online network has become her major source for social contact. It makes Kirsten feel part of the ‘real’ world again. “It reconnects me to who I am outside of the illness, and reignites friendships from all parts of my life. My story is about more than this illness. I still have something to contribute.” Social online networks also gives her instant access to support from people who understands what she is going through. Kirsten follows what other people are doing creatively, and how they live their life. “However,” she added, “the contrast between the lives of healthy people and those who are not, can be ‘very in your face’ and hard to take at times.”

Kirsten took part in a small survey conducted (online) among fifteen people living with M.E., ranging in age from twenty-two, to seventy-one, living in Australia, UK, Finland, and Ireland.

The idea was launched after Corina (48, housebound for years, now left with limited mobility and low energy) found herself making the reluctant entry into the world of Facebookand Blogging. Her initial Facebook page was under the name of her fictional book character Cirrus Kalani, to promote her book. Responses to ‘friends’ were written from his perspective, a 10-year-old Cloud Fairy, having only visited earth once in his life. Slowly Corina changed the profile to her own name and started to enjoy the benefits of this social network. “I love the support, the sharing of photographs of life around us and the little things that make us smile. I found a happy bunch of friends! I think about my new online friends as often as my real life friends. They are all part of my life.” But, she realized that Facebook was becoming a double-edged sword because the time she was spending on the site was impacting on the time she could spend on her writing. She wondered what the experience of other people with this debilitating condition was and as a result wrote a series of questions on her blog and invited others with M.E. to contribute.

“Positive effects are HUGE,” Sophie (30- mostly housebound) commented. “As a naturally extroverted person with lots of opinions, it’s incredibly helpful to my wellbeing and for maintaining ties with my offline friends.” She particularly uses networks like Twitter and Livejournal to stay in touch with other people with M.E.

Adrielle (24, housebound except for short trips out in the wheelchair, pushed by her mum) uses Twitter, Facebook, and Foggy Friend an ME support site. Adrielle also enjoys the contacts on Puzzle Pirates because of the chat aspect. “Becoming ill at the age of eighteen, my real-life friends gradually drifted away. The only people I regularly see are my immediate family. Chatting online lets me talk to people, and it is awesome! I have made lots of friends around my age, who have similar interest to me, and whom I couldn’t live without! Lots of friends also have chronic illnesses (including M.E.), so they really understand and can offer real support.” She added that she uses a ‘talk to text’ program on heriPad, which allows her to use Twitter when unable to type. She is keen to raise awareness and increase people’s understanding of M.E.

Kate (22, Mostly housebound) feels more connected than she would be without the online networking opportunities. “It is a chance to make new friends and connections. However it is tempting to spend too much time online, therefore using up precious energy. Easy to do especially when you’re feeling extra isolated!”

Adam (71) noted that he does not have many social networks in terms of physical groups of people, other than the camera club meeting once a month, and the occasional chat with neighbours. While taking part in the Creative for a Second Journal Project, the organizer Kirrily suggested that participants sign up for the Facebook page. “Bless her” Adam wrote. “Facebook is having a very positive effect on my wellbeing. I am finding it more and more enjoyable as I extend and deepen my contacts. Facebook is very much a two-way thing, you get responses to what you write. We do need to know that we are alive, don’t we?”

Adam, like many others who contributed to this survey maintains a Blog, which in some way chronicles life with M.E, but maybe more importantly, shows strength and inventiveness, and many creative explorations.

For ‘Cusp’ (54), the virtual contacts are a lifeline. “Blogging has been good because it encourages me to write and express myself, and it garners feedback and discussion.” Having just recently joined Facebook, ‘Cusp’ enjoys the immediacy, silliness and jokes, and support that he finds there. “The downside of Facebook is that you can get ‘sucked in’, stay too long, and get exhausted.”

Julia (46, mostly housebound) finds that using social networks have had a terrifically positive impact on her emotional and psychological well being. She says that it helps her be part of what she feels is an alternative society, and as far as she is concerned, a much more understanding one. Here, she feels she can contribute where otherwise she would feel relatively unfulfilled as an individual in her own right. “I see it as a positive move towards my future.” She added, “Spending time on the computer when my body is hurting can be physically stressful and emotionally fulfilling at the same time. Finding a healthy balance isn’t always easy, depending on what takes priority at the time, I guess.”

As she had experienced some not-so-supportive sites, which had a negative effect on her health, she set up her Facebook- group ‘The lighter side of ME’.

Maija, (26, very limited mobility in the past) feels that if she had not set up her Finnish CFS/ME forum, she might not be alive today. “I would not have heard of my doctor.” In turn she has helped many other people, by introducing them to new doctors, medication, or supplements. She met one of the people of the forum in real life. Besides following manyBlogs on disability, health and medicine, she maintains a food Blog herself. Maija has written two books – one covering CFS/ME/Fibromyalgia treatment and another aboutTwitter. In the latter she has a section about how Twitter can be an easier network to use than other social networks especially when energy levels are very limited. “I got both of the book deals thanks to Twitter.”

Ricky (35, until recently 100% bedbound, now able to sit up for 2 hours) uses Facebook, Twitter, Ning groups, Dreamwith and LifeJournal. Through them she is able to stay in touch with her real life friend online. “I see photos and stuff they do and so forth- not forgotten and don’t feel so left out.” Ricky has a computer system with assisted technology to enable her to work on the computer while lying flat in bed. She builds websites, and writes and publishes online. “Great for my feeling of being ‘useful’ and my ego in general when people respond to my writing.”

Some of the people she has met through Livejournal are now real life friends. Also talking with other people who are ill means that she feels less ‘needy’ to whine to healthy friends. “Which is better for all of us!” she added.

Jenny, (41, partially housebound) also uses Facebook to stay in touch with other sufferers. “The thing I love is that you can post a question and people will pop by with advice. It makes you feel less alone. You meet the most wonderful people and I truly enjoy helping them as much as they are helping me.” Commenting on the downside of social networks, Jenny says, “It can be quite upsetting at times, when you hear of very sad stories regarding the tragic cases – young kids on ventilators, people being unable to walk, and people who have passed away from the disease. She added: “It’s always a reminder that we must continue to raise awareness and educate those who do not realize the seriousness of this disease.”

Dianne (59, housebound) has been ‘woken up’ by taking part in Facebook. She now looks for things to share, and is more aware of her surroundings in case a ‘miracle moment’ might happen. She looks out for amusing or touching things, and so finds herself to be more positive. “Finally!” Dianne said. “I have rediscovered the joy of writing and I try to find just the right word or expression to say something that reflects how I feel. And I have a lot of fun laughing at myself! My world has enlarged and I am grateful to whomever organized this technological networking.”

A network called EGGdish where the emphasis is on gratitude helps Sarah (37, ill on and off for four years) to deal with lives challenges. Through Facebook Sarah connects with long lost relatives and has taken up a family tree project. “It has been great to ask relatives questions about the old days and share photos.” Facebook is also important to Sarah as it helps her to hang on to those parts of her identity that sometimes seem to be in danger of disappearing.

C. (47, housebound at times) has used Facebook to share feelings and creative ideas with others in similar situation all over the world. “I think is gives us an opportunity to grow and learn and it also takes away the loneliness, depression and frustration often felt by the social limitations of having ME. “Going out requires more use of physical and mental energy. We often need to rest before and after going out. Switching on the computer and simply clicking the mouse is easier.” She added that being on the computer unknowingly exhausts the brain, which in turn takes away from other activities that may be better for overall health and healing.

S. (47, able to go out quite a bit), observed the danger of over-reliance on social networking to the detriment of establishing real and meaningful relationships, face to face. Aware that some people have few other options, she feels that it is important to not let the Internet be the only means of communication. However, S. experiences the contacts via online networks as hugely positive. “It has helped reconnect me to the world and strike up relationships with people I would never have had the opportunity to meet. It has helped me to share and obtain information and provided education and entertainment in lots of different ways. Diagnosed with M.E. fifteen years ago, we didn’t have the Internet then and I felt lonely, isolated, and very disconnected from life.”

Social online networks and the Internet in general are almost like having the world at your fingertips. Meeting likeminded people online and facilitating ways to stay in touch with friends from pre-illness times, proved to be a significant tool in the management of their illness – especially those who suffer from chronic illnesses like M.E.

For further information about M.E. please visit Information. For full responses to the survey, see Blog at www.corinaduyn.com

the other, more condensed version, shows a more general view :

“Stepping naked in front of the whole world…”

Social online networks, and the Internet in general are almost like having the world at your fingertips. A small survey, conducted by Corina Duyn among people living with M.E/CFS, showed that meeting likeminded people online and facilitating ways to stay in touch with friends from pre-illness times, proved to be a significant tool in the management of their illnesses. The majority of these women and men are housebound and in some cases bed bound. The ages of the fifteen people who took part in the survey ranges from twenty-two, to seventy-one, living in Australia, UK, Finland, and Ireland.

‘Stepping naked in from of the whole world’ is the way a young woman describes her first encounter with the online networking site Facebook. After being bedridden and housebound for the past twelve year, making contact with people through Facebook felt “scary”, said Kirsten (32). Like many others in her situation, she rarely sees people other than her immediate family. Now this online network has become her major source for social contact. “It reconnects me to who I am outside of the illness, and reignites friendships from all parts of my life. My story is about more than this illness. I still have something to contribute.” Adrielle (24) agrees. Becoming ill at the age of eighteen, her real-life friends gradually drifted away. “I have made lots of new friends around my age who have similar interest to me, and whom I couldn’t live without! Lots of friends also have chronic illnesses (including M.E.), so they really understand and can offer real support.” Adrielle uses a ‘talk to text’ program on her iPad, which allows her to use Twitter when unable to type. Assisted technology enables Ricky (35) to write and publish online, while lying flat in bed. “Great for my feeling of being ‘useful’ and my ego in general when people respond to my writing.”

People taking part in this survey herald social networks like Facebook, Twitter, and LiveJournal. “Terrifically positive impact on my emotional and psychological well being.” “Incredibly helpful to my wellbeing and for maintaining ties with my offline friends.” “My world has enlarged and I am grateful to whomever organized this technological networking.” “I think is gives us an opportunity to grow and learn and it also takes away the loneliness, depression and frustration often felt by the social limitations of having M.E.”. “It helps being part of society, albeit an alternative one, and as far as I am concerned, a much more understanding one.” “I see being part of this network as a positive move towards my future.” “It makes you feel less alone.” “Able to share creative ideas with others in similar situation all over the world.” “It helps me to hang on to those parts of my identity that sometimes seem to be in danger of disappearing. “I enjoy the immediacy, silliness, jokes and supportiveness that goes on, on Facebook.”

Blogs are another way for people with M.E./CFS to stay in touch with the world while adding their voice to bring awareness about the condition. “Blogging has been good because it encourages me to write and express myself, and it garners feedback and discussion.”

Some people set up their own groups to fulfill a specific need. After experiencing some not-so-supportive sites Julia (46), set up her Facebook group ‘The lighter side of ME’. Maija contributes her recovery to the setting up of her Finnish ME/CFS forum. Others joined specific groups set up by others, like EGGdish, where the emphasis is on gratitude, or Foggy Friends, an ME Support site, or Puzzle Pirates for the chat aspect.

Even for those who can take part in everyday society, albeit at a much reduces rate, social online networks have their place. Adam (71) noted that he does not have many social networks in terms of physical groups of people, other than the camera club meeting once a month, and the occasional chat with neighbours. “As I extend and deepen my contacts on Facebook, I am finding it more and more enjoyable. It is very much a two-way thing; you get responses to what you write. We do need to know that we are alive, don’t we?” Sarah (37) has connected through Facebook with long lost relatives and has taken up a family tree project.

The downsides of partaking in online networks are mainly due to the limited energy available. “You can get ‘sucked in’, stay too long, and get exhausted.” “Spending time on the computer when my body is hurting can be physically stressful and emotionally fulfilling at the same time.” “The contrast between the lives of healthy people and those who are not, can be ‘very in your face’ and hard to take at times.” “Easy to overdo it, especially when you’re feeling extra isolated!” “It can be quite upsetting at times, when you hear of very sad stories regarding the tragic cases – young kids on ventilators, people being unable to walk, and people who have passed away from the disease.”

For people who are severely restricted in their ability to partake socially in the real world, online networks are a profound way of communicating with friends and family. The online support networks proofed to be a lifeline to many. Although the danger of over-reliance on social networking, to the detriment of establishing real and meaningful relationships face to face, must not be ignored. Ricky sums it up nicely: “Some of the people I have met through Livejournal are now real life friends. Also, talking with other people who are ill means that I feels less ‘needy’ to whine to healthy friends. “Which is better for all of us!”

For further information about M.E. please visit Information. 

Please forward the above articles  to newspapers, magazines, ME/CFS support groups etc. just let me know where you forwarded it to.

The articles are available as word documents.

Many thanks to all who participated in the survey and for "Stephie le Coccus" (Facebook name) for editing the long version.